Martin Kilincli: Hi Again after... - Sickle Cell Society

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Martin Kilincli

kilincli profile image
11 Replies

Hi

Again after 4 months the pain in the centre chest has appeared again, obviously sickling but now 7 days and still aching pain.

Can you please give me a suggestion what to do ?

I at the moment take no pain relief and the Doc never came back with any helpful suggestions!

Should I go back to doc for a referral to hospital or is there another suggestion?

Martin

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kilincli
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11 Replies
jo19 profile image
jo19

Hi kilincli sorry to hear you are in pain. You don't give your age of how you have always managed your pain so we know exactly what kind of advice to give you. I don't know what country you are but if you are having a sickle cell crises it is considered an emergency and you can press your at the hospital and find out what their treatment policy is for sickle cell. Hope this helps.

kilincli profile image
kilincli in reply to jo19

I am 46 yrs and live in NZ but for the last couple of years realized I had sickle cell.

I originally come from Turkey and although my mother told me I questioned this and she said she had sickle cell anemia and this was where I had inherited it from.

Fortunately I never knew growing up and never had any problems being that I was an energetic person and slim but as time went on I started to build that fat bulge and when I got the sickle first time around

My wife made inquiries she is from UK originally and eventually found your site but I had been seeing a osteopath by this time and they learnt more but then it was lower part of the body.

The past year since I started a session at boot camp the sickle came up further and then we learnt about sickling and the cells that die leaving a rather mixture of live cells and dead one's

Now I see that this could be a crisis but Doc here knows nothing about sickle cell neither a remedy as such .

I have decided to transfer to another doc and get a transfer appointment to the local hospital in Auckland or North Shore.

Hopefully they will be able to say whether they can attend my problem.

If not what do you advice?

Thanks Martin

jo19 profile image
jo19 in reply to kilincli

Quite a number of countries do not know much about sickle cell. Many of us usually leave in where there are more Afro-caribbean and Mediterraneans as this group have the largest amount of sickle cell and thalasemia. You have to find a hospital that specialises in haematology. You be able to find a specialist doctor who will see you regularly and will find the best way to deal with your pain sometimes with strong painkillers. That way you know where to go and who to see to manage your condition.

kilincli profile image
kilincli

We are aware that certain things activities I cannot do but stopped boot camp when we realized that this was a problem.

As for doing anything mostly it went away after a few days this time it is longer why I questioned.

My mothers problem was not told about until 3 years ago

kilincli profile image
kilincli

I never knew all those years Turkey, med where I lived of such things we were not told of such medical knowledge.

If I had know I would have been able to learn more about it as it is my wife had the sense to track you down.

Finding a doc is now our next duty and to get some help>

jo19 profile image
jo19

Have you ever had a blood test to determine if you have sickle cell? And also you can only inherit the faulty gene from your father and your mother not just your mother. Your mum having sickle cell does not mean you can have it. You need to be sure. I would advise you have a blood test done if you haven't to find your genotype.

kilincli profile image
kilincli

My mother has sickle cell anemia which is carried over and I have also found out my sister has sickle cell trait as well so now all revealed. The word sickle cell only came to port when I had a medical to come to NZ in which time it meant nothing to me but only since 3 years has this been evident in having problems. Yes I have had a recent blood test but nodoubt I have sickle cell trait!

jo19 profile image
jo19

Hi you have got sickle cell trait not sickle cell anaemia. They are different. Sickle cell anaemia is a serious medical condition. Which I have and is usually called the SS genotype. You have the trait which the most common is AS. They are very different. Most AS are healthy but a few can have symptoms that people with sickle cell have but milder. Luckily you have the trait and not the disease. I have the disease. It's called SCD or SS. It is severe.

kilincli profile image
kilincli

sorry i thought I explained that have been with this contact Health unlocked for over 6 months and history was related then.

I was a bit confused when you mentioned both parents can give it to a new born. I was aware of this and my wife realised the confusion as she was the one to pickup the SCT when I started getting the pains mostly then across the hips lower body.

I am sorry to hear you have the more with SCD My mother had 1 stroke and had her gall bladder removed but as I said I never questioned as in Turkey were taught never to Question!

At the moment my pain and sickling has gone but know at some time it will sickle again and I have found a hospital that knows about this SCT.

mmjegs12 profile image
mmjegs12

Hi Kilncli, your pain sound to be intermitting you have been complaining of pain in he middle of your chest, is this followed by a cough (which make the chest pain worse and your breathing worse aswell?) i diagnose or assume what you have, or jump to conclusion, may i ask that you see your doctor or a quliafied heamatolgogy consultant, who can asertain whether you have sickle cell disease or sickle cell aneamia. Like you said during extreme excerise, your illness gets worse and then your back to normal . I would also recommend that you drink alot and have lots of rest, as you live in Auckland NZ, the weather can be very hot and humid at times. Let me know how you get on. Stay safe

kilincli profile image
kilincli in reply to mmjegs12

No it is trait and no cough but it could be also to do with the centre top part of rib cage.

My mother has sickle cell anemia But was late in that info only when I was 42 years did she inform me of my trait but by this time I was in NZ. Shames because I am sure that if I had known back then then I would have had treatment and help and more knowledge !

This area now troublesome is tucked in with muscle and bone but when put out due to over exercise then a separate alternative to sickle cell joins the camp.

I have progressed with the study and realise that exercise releasing the bone back into place helps and pain tablets.

An osteopath would be the other alternative which other times I have consulted with the lower back, again that was bone, muscle out of zinc.

Your right about drinking plenty of water but rest not so easy, sleep yes but a full day at work 3 hours travelling, traffic congestion cannot help.

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